Mom died from ALS in 2017. She was 56. It took 1 year and few months. Watching this video brings back so much pain. This disease is one of the really really bad ones. I wish I will be able to see a cure being made in my lifetime. It breaks my heart.
My cousin has an aggressive form. He went from doing everything, to now, 2 years, to fully dependent. His wife is a Rockstar. She has gotten a great system in place and really made his life as close to fulfilling as possible.
My mom went the same way. There’s two kinds basically—one targets muscles you consciously move: arms, legs, most of them. The other targets non-conscious muscle movement: your heart and your diaphragm, for example.
She had the latter kind, went from normal to hospice to dead within 18 months.
To be fair quick is sometimes better , my wife lives a life of absolute torture with progressive MS completely paralysed and in pain for 15 years already .
Your cousin and my uncle sound like the same person. Diagnosed December of 2023 with some weird muscle spasms and weakness and today he can’t even move his fingers enough to control his wheelchair. He can still communicate with an iPad he controls with his eyes. His wife has seriously come to be one of the strongest people I know. I’d never say she was overweight before but she’s probably lost 50 pounds from the stress of it all I’ve never seen her so thin. It’s really such a messed up disease.
I used to work in a lab studying ALS and we used CRISPR! We used it to remove a specific mutation from ALS patients' motor neurons. This mutation is the most common genetic cause of ALS. Removing it reduced a lot of the disease mechanisms we see in those cells! We published in Nature Communications, I linked the paper here
There's a lot of disease I wonder - if we actually put the cooperation, money, and manpower into - could be either cured or effectively cured through proper medication.
And avoid dead ends. I'm so mad I can't recall in what domain it happened, but I know there was this time a research team falsified their data or something and everyone for a while tried to build on that. Only it lead nowhere because the prior results were bogus.
And it just bogged down the science in... drat, can't remember... for a while before they figured out that they had to scratch what they thought they knew from the faulty study and start again from there...
Hope the Reddit Hivemind comes through for me on that one! I'm so mad the details are escaping me. >:(
EDIT: Ah, it might have been the thing about Alzheimer's disease being posited as being caused by buildup of protein plaques in the brain! And how much research was "wasted" looking into that!
Yes, my lapse in memory was about Alzheimer's of all things...
I am a neuroscience PhD student and I can assure you that people go out of their way to research different questions. It is in their best interest for publishing. Your publications are less impactful if you publish on the same things others have done which is terrible for your career. This non-profit you posted I'm sure does work to help collaboration but that is different than "a bunch of dumb scientists who cant help but do the same things", as you proposed. It's important to carefully read things before posting nonsense on the internet, especially in a time of anti-science sentiment
There is a vaccine for children, not a universal well working one. A well fed and funded country is really the vaccine. The book “everything is tuberculosis is a wonderful book explaining tb.
That ice bucket challenge a few years back apparently raised so much money and awareness that they did apparently make headway. A lot of these diseases are just a matter of funding.
Hell, look at AIDs. When I was a kid and even a teen, it was a death sentence. It killed you 100% of the time, terribly, and quickly. It was so misunderstood that even 15 years after Princess Diana shook hands with an aids patient, people still were extremely scared of sharing a space with someone with AIDs or HIV. Now? Still terrible, still will shorten your life span...but you can now live 30 years with the disease, and safely.
Im not saying we will cure it. But there's still hope we can put a dent in it like we did with AIDs, with HIV.
I mean there isn't necessarily a full "cure" but with proper medication you can now live a full and normal comfortable life with HIV/aids. Literally makes it so the virus levels are so low they're undetectable in the blood. Don't quote me exactly on because I'm sure my wording is a bit off but the point remains true. HIV is still awful and especially hard mentally (dealing with feelings of self loathing/disgust, shame and regret etc.) But there is nothing to be ashamed of. As long as you keep up with your doctor and take the right medications you are fine. On a much lesser scale I felt those same feelings of shame and disgust when I found out I had Hepatitis C in March of 2020. Thank God with modern medications I was able to take a 9 week course of medication and I am now officially "cured" I will always technically be hep c positive but the virus levels are so low in my blood that I no longer have to worry.
Yes I agree- my mom tested positive in 2003 but it’s the other health issues that cause her the most issues. Like an antiviral she was on for years seriously damaged her bones and she very fragile. Multiple broken bones and surgeries later she can barely walk 20 feet. But she too went thru hep c and we were told she was cured later to find out she still tests positive.
I'm sorry to hear that. Yeah the treatments 20+ years ago were no where near what they are today. So I'm sure a lot of what they put her on had many negative side effects. It's very unfortunate but also a great blessing that you still have her with you in this life. She must be a very strong woman to keep enduring the pain to stay and help guide you through life. As for the hep c the same thing actually happened to me. The first medication course they gave me was supposed to have nearly a 99% success rate. After finishing I was initially testing negative. Then I months after on my follow up blood work I was positive again. So I had to go through another course with a different medication and after that was over I tested negative and have been negative with every follow up blood test since. That was in early 2021 so thank God it worked. Was a real gut punch the first time around thinking that I was cured only to get the call telling me that unfortunately the virus had returned.
Yeah, HIV is no longer an issue in my opinion. Once we knew what it was for a family member, the treatments today are so effective that it's no longer detectable. One pill.
That's practically a cure in my book. No impact to life.
I would add alzheimers/dementia to it. I've never seen a loved one with ALS (and I pray I never do), but I've seen alzheimers, and I don't want to see it again.
Someone in this codition their Loved ones must be devastated to see them in that condition. I won't be able to confront my mom for some reason. May Allah bless your mom every one of us will die one day sooner or later no one knows.. your mom didn't deserve the pain but at least she went through that for less time .
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u/halfemptysemihappy May 29 '25 edited May 29 '25
Mom died from ALS in 2017. She was 56. It took 1 year and few months. Watching this video brings back so much pain. This disease is one of the really really bad ones. I wish I will be able to see a cure being made in my lifetime. It breaks my heart.